Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” is an engaging account of the scientific, social and family issues intertwined in the story of a woman from whom doctors took a tissue sample that turned out to have extraordinary properties.
Early in the book we read this passage:
“Don’t be aggressive. Do be honest. Don’t be clinical. Don’t try to force her into anything, don’t talk down to her …. Do be compassionate, don’t forget that she’s been through a lot … do have patience. You’ll need that more than anything.”
The paragraph summed up the ethical and practical principles that I’d absorbed in journalism school, that have guided me as a professional and that I see my colleagues in the media adhering to every day. But Skloot wasn’t quoting a reporter. This was the advice given to her by Dr. Roland Pattillo. Patillo, a scientist and Morehouse School of Medicine professor, knew Lacks’s daughter and understood how profoundly Deborah Lacks had been affected by losing her mother when she was a baby, and by growing up black in America in the 1950s.
With Pattillo’s help Skloot goes on to interview Deborah. Skloot also talks to other members of the Lacks family as well as doctors, researchers and journalists. She digs into archives and attends medical conferences. We learn in her book of the cells removed from Henrietta without her knowledge shortly before she died of cervical cancer in 1951. That tissue sample turned out to be the Holy Grail for which geneticists around the world had been searching. Henrietta’s cells can live and grow outside the body, allowing for tests and research that opened the way for advances like the Salk polio vaccine.
In the story of Henrietta’s descendants we get a vivid portrait of Americans who, because of racism, have historically been barred from the benefits of from their nation’s scientific triumphs.
Harriet A. Washington, like Skloot a seasoned science journalist, writes in “Medical Apartheid” of “two Americas, one healthy and white and the other filled with sick, disaffected people of color.” Washington wrote a magazine article about Henrietta before Skloot tackled her book. Skloot says in her acknowledgments that Washington was “a wonderful champion” of “The Immortal Life of Henrietta Lacks.”
Washington, a black woman, documents in “Medical Apartheid” a long history of blacks being experimented upon for the medical benefit of whites. The voices of many of those black subjects have been lost to history, while the white researchers left memoirs and interviews to shape the narrative. Skloot, a white woman, resurrects those who have been forgotten in her portrayal of Deborah’s anguish and mis-education, creativity and tenacity.
In “The Immortal Life of Henrietta Lacks” we glimpse African-Americans gaining knowledge they can use to assert that they are, as Washington puts it, “worthy of care,” and to claim the rights they are due. And we see how, for white Americans, understanding history can lead to understanding people, which will surely make them better researchers and physicians – alongside their black colleagues.
In “Medical Apartheid” Washington writes of her hope that confronting the facts of unethical research on African-Americans will help us all find a key “to removing barriers between African-Americans and the bounty of the American health care system.”
Journalists tell stories to hold the powerful accountable. Or to ensure the powerless aren’t silenced. Or sometimes simply to spark curiosity, a basic human impulse that can lead to empathy.
In the course of her reporting, white medical researchers told Washington that her book should not be completed because it might discourage blacks from participating in scientific studies. Skloot ran into the reluctance of some Lackses. Readers benefited because journalists persevered, committed both to their specific stories and to the craft of story-telling.